Transitioning from Synthetic (Levothyroxine) to Natural (NDT: Thyroid-S)

[Alphawave]

Hi there

I am new here and hoping to be able to both provide and receive guidance and support with regards to Hypothyroidism and specifically the journey of transition from Levothyroxine to NDT.

BACKGROUND

My diagnosis of Hypo was in about 2008, although I suspect that I have been a sufferer of this disease for many more years than that.

I was of course prescribed Levothyroxine and have been taking that daily ever since, increasing consistently in small amounts until my blood tests stabilised around two years ago at 150 mcg of Levothyroxine.

Until March 2017, I was taking 162.5 mcg’s and my GP was happy with that being the optimal dose for me.

My blood results in November 2016 were:

TSH:3.42 Top of the normal (normal range 0.27 – 4)

FT4:16.3 Middle of the normal range (normal range 12-22)

FT3:3.9 Middle of the normal range (normal range 3 – 6)

However, I have continued to gain weight slowly and arrived at my heaviest weight in late 2016 (with small fluctuations over the years depending on my diet and exercise).

My other hypo symptoms (in addition to difficulty to shed weight) were insomnia, lethargy( very slow to get moving in the morning), coming alive at night, fuzzy head, low moods (managed by my own knowledge of neuro science), dry and brittle nails, slow recovery after exertion.

I have never suffered with sensitivity to cold and in fact, I overheat frequently and I have never had hair loss.

TRANSITIONING TO NDT

After meeting someone early this year who had tried Thyroid-S and after hearing how her symptoms had improved as a result, I purchased the book ‘Stop The Thyroid Madness’ and purchased some Thyroid-S online.

On 17th March 2017, I embarked on the NDT (Natural Dessicated Thyroid) journey and followed the advice in the book as well as anecdotal guidance from various threads I read on Thyroid support websites, increasing by ¼ or ½ a grain of NDT and reducing Levo by the equivalent amount.

During this journey, I have felt for the most part better (although I have suffered major dips in energy each time I have increased my dose – something to be expected apparently) and my weight and dress size has slowly, but consistently reduced.

Having held on between 2.25 grains and 2.5 NDT and 0 Levo for 5 weeks, I had my bloods done last Tuesday and the results caused the doctor to phone me, very concerned.

My results now in June 17 are:

TSH:9 (normal range 0.27 – 4)

FT4:9 (normal range 12-22)

FT3:5 (normal range 3 – 6)

I told her that I was surprised to hear this as I feel better and that my body is responding better to NDT than to Levo, although I have been suffering with very bad (lasting 12-14 hours!) headaches for four weeks (which I put down to a car accident and whiplash injury suffered on 20th May) and major energy slumps (which I put down to increasing from 2.25 to 2.5 midway through the 5 weeks because I felt I needed to based on my symptoms).

What I am pleased about is that my T3 score is higher than it has ever been and this I believe is down to taking NDT which provides T3 directly.

However, my T4 has reduced significantly and I am concerned that it’s because I stopped taking the Levo which provides T4 (I know NDT does too, but I believe not as much?)

My GP is insistent that I return to Levo (of course!) and I am reluctant to return to a medication that for 9 years failed to even manage, let alone, eliminate my symptoms.

I am committed to continuing with a natural thyroid solution, but I am stuck as to what to do next.

My GP and I agreed (her, reluctantly!) that I would continue with the NDT and return in 3 months for another blood test (that will be 6 months since I made the change and just under 5 months without any Levo at all), but I am obviously concerned now about making my T4 level any worse in the meantime.

I am not asking for advice as I recognise that we are all different and there are so many factors at play here, not least the added complication of having had a car accident a month ago!

What I am after is alternate perspectives from people who have embarked on this journey, so that I can make a decision about my next steps from a position of clarity, rather than knee-jerk.

Thanks so much in advance.

Tamsen

[witchcat43]

Hi Tamsen,

As you know your TSH is way to high, this could be caused by your taking both Levo and NDT together (not usually a good idea). As far as your NDT is concerned it is over 85% T4 with the rest being T3. On NDT your TSH is usually optimal under 1 (mine's 0.02). It's possible the headaches are from the change in meds but because of your accident you won't be able to tell. Have you had any palpitations?

I changed from Levo to NDT last September, but completely stopped the Levo and started taking 1 grain of NDT (no crossover), upping the dosage by 1/2 a grain every 12-14 days, I went to 2.5 grains but had to drop back to 2 as I was getting palpitations and headaches. I stayed on 2 grains until Feb then upped to 2.5 again bit in April I dropped again to 2 but added 12.5mgs of T3...feel wonderful now.

[Alphawave in reply to witchcat43]

Hi Witchcat43

Thanks so much for the reply.

The friend who recommended Thyroid-S is under the care of a specialist and she takes both NDT and Levo and has done for over a year and all her Hypo symptoms have been eradicated which is why I did a gradual transition.

Perhaps that was an error.

My TSH is a concern, especially as it was 11 when I was diagnosed and the GP said to me "I'm surprised you are still able to stand up!". 9 isn't far off 11.

Thanks for the clarity re NDT make-up - that's helpful. I have had no palpitations at all and I check my blood pressure daily and it's mostly normal (although today it is high).

Your journey is also helpful, thank you. Our of interest what T3 are you taking combined with your NDT?

[witchcat43 in reply to Alphawave]

Hi, I'm taking Thyro3 at the moment, 25mg tabs, currently taking 1 tab a day split into 2

[Alphawave]

witchcat43 Interesting... Thank you for your insight and for sharing your experience with me.

[Kiwidel]

Hi, I switched from Levo to thyroid-s at the end of Nov last year. I did a straight switch (no Levo, started with 1 grain then gradually increased to 2 1/4 over about 2 1/2 months). I have suppressed TSH, FT4 lower end of range and FT3 c75% of range when tested fasting and 24hours after my last dose.

Doctors have tried to tell me to reduce my medication level, but I feel more healthy than I have done in years, and have learnt the hard way along the way that taking their advice about changing / reducing medication isn't always right! You are the best judge of how you feel.

I'm not an expert by any means (and I know you didn't ask for advice), but you mentioned that you had been on your current dose for 5 weeks prior to the test - that isn't quite long enough to see the full effects of the dose on TSH / FT4 in blood tests (most advice here says 6-8 weeks). Having said that, given your blood test results, I think you were under medicated when you were on Levo and that you are currently taking too low a dose of thyroid-s.

[Alphawave]

Thank you for taking the time Kiwidel, I appreciate it.

It seems maybe I ought to have just gone straight from Levo to NDT without the phased approach. I thought I was being more sensible phasing it in, especially as my friend is on a combination of both under the advice of a specialist.

My other error is that I took my NDT on the morning of my blood test which I knew not to do - I was just on autopilot and by the time I realised, it was too late! So, the result could be skewed.

I am not overly concerned about my T4 result, it's the TSH level that concerns me a bit, just because it is just 2 off the level I was at when I was diagnosed, but I know that TSH is not considered the best judge anyway.

Thank you for sharing your perspective, that's useful - and the point about the length of time on this dose.

I think I will request another blood test tomorrow for three weeks time and make it a morning appointment so that it is also a fasting one (and make sure I've not taken my NDT!)

Thanks again!

[Alphawave]

p.s. what do you mean by suppressed TSH?

[Print1972]

Hi. Ultimately it's about how you feel my attitude is if my TSH levels are good on Levo, but I feel lousy, I'd rather be on NDT, with higher levels but feel great. Doctors go by the stats. I prefer to go by how I feel. I changed over two weeks ago. My terrible muscle pains, that only started after I was put on Levo, have magically disappeared, now I'm on NDT. Don't worry about the tiredness when you up the dose. I've had it too. It's the sudden inclusion of T3 into our system. It subsides after a few days.

[Alphawave in reply to Print1972]

Thank you Print1972, that's encouraging!

[shond2015 in reply to Print1972]

I do wish that I could print this off and show my GP tomorrow. What you say is music to my ears and very inspirational. I have placed my first order for NDT and can't wait for it to arrive. anytime after 1st Aug!) I have an private Endo appointment on 27th July (one that was recommended from TUK site so won't probably start NDT until after I have seen him. Then I will be typing furiously on the site asking for advice on what to do and how to take it...ts all a bit scary really having to self medicate...but I am so thankful for all you people who have been there and done it before me!! thanks.

[Print1972 in reply to shond2015]

Hi just take it steady at first. I was on 125mcg of levothyroxine, and stupidly thought I could just take the equivalent in Thyroid S. My goodness, it was like being hit by a sledgehammer. The sudden inclusion of T3 into my body, and especially the amount I rammed in, was to much. I then saw the advice on here, and took half a grain in the morning and half in the afternoon. I was much better. However, after a 10 days, I added another half a grain. Felt a little unusual on the first day, but then settled nicely. It really is just a phased step by step process. Font get downhearted if you feel tired. It's purely your body getting used to something new. It needs to adjust and absorb, and this takes time. My legs are now pain free, and that's only after approx 3 weeks.

[shond2015 in reply to Print1972]

I am currently on 150 mcg Levo (was on 200 a couple of months back) and inspite of this high dosage - other than not suffering the really cold body temperature (even on hot days) , my symptoms didn't improve. It has taken 2 years of taking Levo and waiting patiently and optimistically to feel better (which never happened), and reading the many many experiences of people on this site for me to realise that (unfortunately) Levo has been no help to me whatsoever. My belief (like yours and so many others) is that, I am only in this life once and I am not going to suffer needlessly if there is treatment and medication out there to help me. I am so very angry with the system that neglects such an important medical issue.